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OhioArt2

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Joined
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Messages
16
Reason
CALS
Country
US
State
OH
City
Toledo
I realize that I don't post much here -- but I am a daily lurker.

Last Thursday my mom decided to tackle the 4 stairs that lead to "her" floor of the house. You know what's coming: she has managed them with some strategically placed handrails and her walker... but last Thursday I hear a giant crash and there was mom - flat on her back.

After I cussed out 911 a bit... because even 911 can't move fast enough, y'know... we managed to get her to the hospital. The stay was traumatic in that they left her in bed for 4 days. There wasn't a bone broken - she had a small bleed but nothing intensive. She could have come home the next day had the nurse not freaked out about her heart numbers (whatever those are that come back when they check for a heart attack). When her Primary care Dr. showed up he asked about the #'s because the initial testing showed that it was 5xs higher as someone who had died of a heart attack. He ordered the blood retested - and wouldn't ya know it = normal.

She is in a rehab facility now - because she can't even sit up. She could sit up - get up to standing - walk with her walker - and go down stairs and up stairs (well... the 4 which we had forbid her to do -)
Now - she can barely hold a pen to write. (She can't speak)

I am SO frustrated.
She is petrified of losing her house (she lives with me but her house is the only thing she owns and she considers it her legacy)..
and now we have to figure out how to
#1 - afford a nurse 6 hours a day while I am at work
#2 - get her to the point she can be alone a few hours a day (which I don't think so!)
#3 - figure out how if I quit my job we can still pay bills and raise 5 children.

You've heard it all before.
My mom is tired... and scared... and wants to just come home but is scared we can't take care of her ourselves... scared of losing her house... etc.

Any advice?
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
I am so sorry that you and your mom are going through this. What kind of nursing care does your mom have now? Now that she needs more care are they able to help more with the insurance paying, esecially if her dr. wrote a script for her stating that it was a medical necessity?
We are dealing wh the same situation about figuring out care for my MIL although it is because her husband is a jerk.
I hope i can be of some help to you, I find insurance is horrible to deal with I find it amazing how little help out there there is for people with ALS.
Hoping for the best for you and your mom
In friendship
Jeannie
 

OhioArt2

Member
Joined
Aug 17, 2007
Messages
16
Reason
CALS
Country
US
State
OH
City
Toledo
Thanks Jeannie. My mom's only care has been my husband and I. We both work... and she was actually ok for the few hours I was gone. We had *just* started asking about getting in-home nursing visits.

The insurance co. (Paramount Elite) assures us that when she is ready to come home - her primary care Dr. can call to have our house and her condition evaluated. The worste is that they will say that she has to stay in a nursing home... the best is that they will allow nurse visits for as long as we need them daily (we may have to pay 20% or even nothing) -- the social worker told me today that she has NEVER heard of Paramount Elite EVER doing anything like THAT.

Oy.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey there oy,
I'm so sorry that you are going thru all of this right now. I pray that you have guidance from someone soon. Maybe you can meet with the social worker/or a good nurse/ at the hospital and talk about home health checking in on your mom after she comes home? I know that the home health agencies where I live usually have a list of "private sitters" that are available on a cash-pay basis.
What about church families for your mom or you and your family? Sometimes there are plenty of people in the community that will VOLUNTEER to sit with someone for a few hours a week. You get enough of them together, and you might work something out.
I know it's probably all overwhelming right now, rest yourself, and hopefully, your mom will gain her strength back every day.
Never give up,
Never let up,
Never lose faith,
brenda
 

OhioArt2

Member
Joined
Aug 17, 2007
Messages
16
Reason
CALS
Country
US
State
OH
City
Toledo
Never give up,
Never let up,
Never lose faith.

My new mantra.

Thanks you guys.

If it comes down to it - I will quit my job. Not sure how survival will be having to do that - but I know God will work all on out. Thanks for the suggestions - I get frustrated with the hospital social workers - I get frustrated with Doctors and nurses - I have read on other threads about how people constantly hear "ALS... I'm not sure I know much about that..."

And here is how stupid *I* am - I didn't even THINK to ask my church. HAH!

The good news is - my mom is even getting tired of it all and FINALLY stated she just wants to come home. I figure her frustration is a good sign :wink:

Never give up,
Never let up,
Never lose faith,
Never give up,
Never let up,
Never lose faith,
Never give up,
Never let up,
Never lose faith...
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Another thought: Is she registered with your local MD chapter and ALS society? THey might have funds, social workers, ideas, something. And go get the book "Share the Care." Or go to their site for some great tips on how to organize help for you, as caregiver! http://www.sharethecare.org/
 

OhioArt2

Member
Joined
Aug 17, 2007
Messages
16
Reason
CALS
Country
US
State
OH
City
Toledo
\I am calling MDA tomorrow - mom IS a member there. I have had the insurance company say that they can evaluate mom and WILL give her 5-hours a day 5 days a week. Every social worker (hospital and rehab) said that they have NEVER seen that happen.

MDA has their own social worker - the lady at the insurance company (well... - it's paramount elite - they handle mom's medicaire) said to ignore all the hospital/hospice/rehab social workers and call the primary care DRs social worker instead.

The hospice social worker wants mom evaluated and to get her involved in hospice right away....

*sigh*

I'm tired of circles. I will call MDA tomorrow and see.
 

OhioArt2

Member
Joined
Aug 17, 2007
Messages
16
Reason
CALS
Country
US
State
OH
City
Toledo
OK

MDA sent me to another social worker.
I am awaiting for a return call.

I wrote a letter to my congresswoman too.
Hey - it won't do any good - but boy I feel better!
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I hope this works out soon! Keep us posted! Cindy
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
I really feel for you as we are dealing with the same situation over here with difficulty getting the proper care for my MIL without anyone having to leave their jobs (which in itself would be finacially devestating)
I think it is horrible that there isn't enough care paid for through insurance / medicaid/ etc
I hope you find some answers.
You are in my thoughts and prayers
Jeannie
 
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